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Spinal cord stimulators

Posted , 7 users are following.

buggsy1000
buggsy1000

Hi all, last week I had a low frequency spinal cord stimulator fitted. I started getting high BP, really bad headache and feeling sick so they kept me in. The surgery was done under a local only so no GA or sedation. I had to rtn again yesterday as I was still getting the headaches and sick feeling but I had it on a high setting 8.6 out of 10 as lower I couldn't feel anything.

They have now changed the leads and device to a nevro HF10, I am still getting the headaches and they now can't do a MRI as the leads are not compatible. I am not feeling any change with the device and it isn't assisting with the pain, I know it's only been a day but I don't know what I am to expect from it.

They want me to keep the trial going for 2 weeks.

Has anyone got any experience good or bad they can share.?

Thanks

George

0 likes, 33 replies

33 Replies

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  • lisaj77
    lisaj77 buggsy1000

    Posted

    Yes i had alot of trouble with sharp jabbing pain down my legs and arms. I had to have it removed after a few months.
    • TreasureNurse
      TreasureNurse lisaj77

      Posted

      If you were experiencing sharp jabbing pains down your legs, then your settings were wrong. The rep for the company who made your stimulator should have followed up with you and tried different settings to eliminate the sharp jabbing pain. I had the same thing happening with mine and I demanded setting changes. The rep changed the settings and the sharp jabbing pain stopped.
  • paula12295
    paula12295 buggsy1000

    Posted

    I recently had the permanent nervo hf10 implanted 2 weeks ago, I did have severe headaches for about a week but it went away. I do know when you have the permanant one in you can have an MRI of you head and the extremities just not your torso. I had to have a MRI of my head yesterday becuase I have MS. If you can hang in there I would speciallynae if it is helping with you pain. It has made a Hugh difference with mine. I never thought I would be this pain free. The only thing my SCS has not completely helped me with is my severe hip pain. I wish you the best.
  • TreasureNurse
    TreasureNurse buggsy1000

    Posted

    Hello George,

    I have a spinal stimulator. Pain around the battery site is normal. It will go away as your body heals. Most important is to keep a journal of how you and your body are reacting to this process. Too often patients get caught in the process and don't get heard on a serious level for what they are experiencing. By keeping a journal and sharing with your doctor it places you in the category of patients who are serious and want the best results. Stimulators are great but the companies who make them need to hear from the patients too. I discovered that the patients don't have a connection to the creators of these stimulators. And the doctors don't have the answers for the patients when they ask good questions about what has been placed in their bodies. Keeping a journal today and everyday can establish good research for the doctors and manufacturers. It also can help the manufacturers improve on what they create.

    May your body heal and good results happen,

    Susan, RN

    • buggsy1000
      buggsy1000 TreasureNurse

      Posted

      Hi Susan

      Thanks for your comments above.

      I finished my trial last Friday and sadly the Dr decided that I wasn't getting enough pain relief from the device, I kept a daily record of pain scores, what I was doing ect. They decided to take the device out there and then, this decision was made because I only got relief in my left leg of about 60%, but no different results in my right leg or back.

      So they said it's a failed trial and took the Device out there and then. They said they will get me back In a few months to discuss going forward but they also said I will have this pain and the pain will probably get worse as I get older ( I'm 37 ).

      I feel at a complete loss as I know there isn't anything more they can do, also once they took the device out they just sent me on my way, would have been nice to get more advice there and then on what they can do if anything going forward.

      Trying to keep my head above the water but it's not easy. 37 yrs old, failed spinal ops and failed fusions and now a failed device. The pain had been so bad I had to give up work, they have told me they feel I should be in a wheel chair as I can hardly walk 200 mtrs, but at 37 and 2 young kids 3 and 7, I don't want to go down that route until I really need it, I use crutches at the moment.

      Just trying to stay away from the dark thoughts I used to get a few yrs ago.

      Regards

      George

    • TreasureNurse
      TreasureNurse buggsy1000

      Posted

      Your trial was not failed. I have my stimulator from St Jude. They only required 50% relief. It is not the doctor who decides the criteria. It is your insurance plan. Stimulators don't always work the same every day. Some days are good at more than 50% and some days are less. Any reduction in pain is good. Contact the company who made your stimulator and discuss the parameters with them and ask them to refer you to someone who is not going to control your pain level. The dr removed your stimulator but did he give back the money he was paid to put it in and take it out? You have to be tough with the system or they will keep you in pain. I would find another dr because the one you have was too quick to jump the gun.

    • buggsy1000
      buggsy1000 TreasureNurse

      Posted

      Hi treasure nurse

      Sadly I am in the U.K. So this was done on the NHS, at the leading Center in Europe at guys hospital so I have no say, if they say it isn't right they just left it at that and removed it.

      They told me that now it's removed they won't get funding again for me.

      Going private they wanted £130,000 which I don't have.

      Regards

      George

    • TreasureNurse
      TreasureNurse buggsy1000

      Posted

      Hi George,

      I understand that feeling of being at a complete loss. My profession of 40 years as an Emergency Room Nurse came to a complete halt because I cannot lift patients or bend since my spinal fusion was done. I felt like all my hopes and dreams came to an end. It can rip your soul. I had to pull myself together and stop thinking about everything I lost or could not do and point myself in the direction of what I could do. Slowly I created a business that I could work from home. Then I kept on and created a website and took it a step at a time creating all my business documents, brochures, etc. I took baby steps because I could not sit for more than a few minutes at a time. The entire business was created while recovering in bed. It helped me to focus on something good. Then I kept trying to do things that would enhance my business, and successfully completed on line courses to enhance my credentials. All of this was propelling me away from the misery of pain and immobility. I still hurt but I know that I still have a brain that has a lot to offer. I took that single thought and kept thinking what I have to offer others and pushed myself to keep on creating and started another business that I can work from home. Think about something you enjoy doing and throw yourself into it. It will distract you from how you are feeling and from everything the doctors have said. You are young and have a lot of years to bring something forth from the deepest part of your being that can help others and help you to get through these changes that have altered your life. Show them you can knock it out of the park. You have something great in you to give to others. Never let a doctor's words penetrate your being and make you feel lost or unable to move forward. Always remember that God created you with something in you to share with others, and that as long as you have the breath of life in you God will help you get to a place of being strong and productive in everything you do.

      Be blessed in all you do,

      Susan

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